The Fabry Registry

The Fabry Registry
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If you have Fabry disease, you should consider joining the Fabry Registry. Among other benefits, the information you can provide may help scientists develop new treatments for the genetic disorder.

About the Fabry Registry

The Fabry Registry is the largest international patient registry database dedicated to Fabry disease. A group of physicians with extensive experience in managing patients with the disease oversee the database and lead its efforts. Sanofi Genzyme sponsors and maintains it.

One of the registry’s main goals is to better understand the variability and progression of Fabry disease, both within the patient population as a whole and among women specifically. The other primary goal is to monitor the long-term effects of the treatment Fabrazyme, an approved enzyme replacement therapy developed by Sanofi.

Participation is voluntary and participants may be contacted for follow-up. You can choose to receive information about research studies and upcoming trials that are relevant to you. You may opt-in or opt-out of the registry at any time.

The registry’s database also helps increase the understanding of Fabry disease by encouraging doctors to collaborate and share information and expertise.

How do I participate?

Only your doctor can enroll you in the Fabry Registry. If you would like to participate, your doctor will have you sign a release, which allows him or her to share your medical information —usually including medical history and disease progression — with the registry.

The Fabry Registry has a recommended schedule of assessments, which are medical tests that will provide information that the registry would like to have to compare with other patients. Depending on your age, gender, and stage of disease progression, the tests and schedule will be different. Again, you do not submit this information; your physician must do so.

Possible uses of database information

The database can be used to inform treatment schedules for Fabrazyme and other treatments. Physicians also can analyze the data contained in the registry to help them develop their recommendations for treating Fabry disease patients.

 

Last updated: July 14, 2020

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Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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